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So much can happen in the space of a year that often one easily forgets what has gone before. I for one never realised how much the surgery would alter the way I viewed life. It is one thing to get over the effects of the operation, but another to actually regain stamina and get the cardio-vascular system working well again and get back to your happy self!

For many women, any gynaecological surgery is painful and uncomfortable, but I think the thing that I found hardest to do was to rest and recover. Of course there are many things that go through your mind whilst having to rest. Yes there were tears and frustration, and it was challenging to say the least on so many fronts. I found it an ideal time to look back and consider how much life had changed before surgery and most importantly I had time to plan, think ahead and consider a new way forward.

I have discovered over the year that some people prefer not to know about health issues and many people think adenomyosis particularly will happen to someone else and not them. I have spoken to and emailed hundreds of women who, like me, have had to face up to the reality that when your body is hurting, something IS actually wrong.

I have been approached by hundreds of organisations all over the world who are actively supporting the association's work. There have been over 100,000 visitors to the website who are searching for adenomyosis via search engines looking for 'adenomyosis', 'pain relief for adenomyosis' and struggling with'adenomyosis and miscarriage'. Whilst the feedback about the website has been positive, I have also had one or two emails that have clearly indicated that some government bodies and organisations simply do not seem to care about women's health generally and do not feel the need to improve the standards of diagnosis in the detection of the condition. I expected this, so it came as no shock to me. In fact it made me even more determined to try and influence others to take the matter more seriously.

I felt that to get noticed, the organisation needed to gather more data, so in response to this I decided to go one step further and asked women suffering from the condition and those who were now treated to participate in a global study to see if there was a link between everyone, some common cause (nature or nurture) and whether anything else had had an impact on their condition. So many women came forward and many responded selflessly. The results are of course yet to be published in 2013 and will no doubt interest many who work in the field of gynaecology and beyond. The support from the association members has restored my faith in humankind again, that there are others out there who understand and like me want answers for themselves, their families and future generations.

Of course the survey was only one way of reaching out to others. I have over the last year received some fantastic feedback from women from all corners of the globe, some of whom cannot openly talk about women'sissues health and other problems as society still does not afford that freedom where they are located in their part of the world. This in itself is a hurdle that it has been great to (in a small way) overcome a barrier which had not previously occured to me. I have heard from young girls battling with this condition whose lives have been turned completely upside down, women of all ages who want to go on and have a family despite their pain and distress and from their partners and other family members who have been searching for more information about adenomyosis.

I can only say that without the skills of my surgeon MrPakarian, goodness knows where I would be now. I owe my health to him and his colleagues who took very good care of me at the point I needed their help most. It is down to clinicians with skills and teams like Mr Pakarian all over the world to diagnose and treat this cruel and debilitating condition. With the advance in treatments such as OSADA by Dr Osada and Dr Silber in the USA, women can look forward to a more healthy, controlled and comfortable life, and it is for the medical profession all over the world to look to these leading clinicians to get the training that they need to detect, treat and help more women overcome adenomyosis.

Moving forward, here's to another year of supporting others and spreading the awareness yet further.

Wishing you all very good health and happiness.

Danielle x

52 Comments to One Year On:

Thank you for such a great site. I am 29 and have been diagnosed with endometriosis since 24. I have had two laparoscopy ops. The first found endo and was treated, the last op found nothing. The pain hasn’t ever really gone away. Painful intercourse for years and it has got worse in the last two years. I have been on the pill without breaks for over a year and nothing has changed. Looking at your symptoms page I have 90% of the symptoms of adenomyosis. I am going to have a second opinion on Monday from a different hospital as the last one discharged me with IBS. In your opinion do you think that it is likely that I have it and how do I make my consultant investigate it? Thanks x

I almost felt like I was reading my own comment when I read yours! I am 35 pain started 7 years ago and have had 2 laprascopic surgeries for Endo and no relief.. Excruciating pain, esp. when sitting. I was finally diagnosed with Adeno in June 2012 and going in for consult on Oct 18th to plan for hysterectomy (just uterus). My Obgyn finally saw that I had Adeno on my last ultrasound. You should tell you Dr. what you have read and ask for an ultrasound... unfortunately, it is not always clear. I have been on continuous BC for years and was doing ok for short periods of time, but had to leave my job due to the constant pain. I am soo done...I wish you luck, keep on your Dr. and educate her/him...

angie on 18 October 2012 10:52

So sorry to butt into your post but hoping you have any advice for me please...I'm so desperate. I was bleeding heavily for years and tried everything from coil, implant, the pill and it all made the bleeding worse plus my pain was awful. With all this I was exhausted all the time and my iron low. Then 3 years ago I had an endometrial ablation. This helped with the pain and eased it plus I didn't bleed anymore except for some spotting. But then a year ago the pain started again and has gotten worse. I have kept a diary and I have some pain through the month but worse times are when I'm ovulating and ment to be menstruating. I mostly always have lower back pain just worse at some points, I have awful bloating and windy, bad spots, really tired all the time (even though 3 times a week I run or brisk walk and this totals 10 miles) but this tires me out so much I have to have a sleep, I don't sleep for longer than 3 hours at a time at night, the pain is usually in one ovary or both but also pains in my thighs, also get bad period pains lower abdomen. I have an appointment to see the gynaecologist in 3 weeks. What do you suggest I ask him to check for and what do you think it might be? I am so desperate to be pain free and live a normal life I would have it all ripped out if I had the option.

Hi Angie, yes - go ahead and ask him to do an MRI scan to look for adenomyosis. All your symptoms sound very similar to those that I had. It may also be worth being checked for low iron stores - which is a different test and WILL indicate if your body is under the sort of pressure that you describe in terms of weakness - not anemia per se however that you are losing blood and the nutrients that you need faster than you should be. Just a final thought, also ask him to check your ovaries for cysts - as the hormonal imbalance may be something to do with either or both if no adenomyosis is spotted straight away. I wish you the very best of luck, keep in touch and let me know how you get on x Danielle x

angie on 19 October 2012 21:29

Hiya Danielle. Thank you so much for your reply. I will certainly do what you suggested. This year so far I haven't had my iron checked but end of last year it was low as per usual. These kind of hassles seem to be in the family. As my mum had to have a full hysterectomy when she was 32. Now that was a long time ago and those days they didn't know as much as they do now. I've been told I have IBS and then that I'm gluten intolerant. I also have had cysts on the ovaries which have gone with medication. I sometimes think and feel as though I'm losing my mind and I'm making this stuff up. I do as much excercise as I can which is a brisk walk 3 times a week that totals 15 miles. But I do have to sleep during the day as I could never make it through till about 7pm at night if I didn't. I get so tired it frustrates me awfully. But fortunately I have a very understanding husband and together we get things done. It's not an easy way of living but what else am I ment to do???? x

Lori on 04 November 2012 12:35

I found out I have Adenomyosis finally after a year of suffering. Now I go back to the doctors on Tuesday. Now anyone tell me should I go for a full hystercomy to stop this all together or can I keep my ovary. Yes I only have one ovary lost the other one yrs ago due to a cyst. I mean I'm 45. I just need this pain to be over with, I'm so miserable, tired and constant pain. Only time Im not in pain is one week out of the month right after my period and it starts right back up again. Please HELP

Hiya Lori. Sorry I don't have the answer for you as I feel the same as you...I'm soooo tired of being tired, all the pain most of the month etc. So sorry you having a rough time. Hope you don't mind me asking please, how did they find out you had adenomyosis?

Nicky on 25 November 2012 15:21

Just been forwarded over to this website from a link on endo uk, which is great thank you.
Im really interested to know your thoughts on conceiving (unfortunately due to everything i need ivf) after having adenomyosis removed... and obviously if my chances of ivf working are reduced ??
any advise would be great, thankx

Hi Nicky, thank you for your enquiry. You may like to visit the LIVESTRONG website that has excellent advice about fertility and also removing excess estrogen from your diet etc. Managing the effects of adeno to ensure pregnancy is not easy, but it is possible and a healthy pregnancy can be achieved x

Heather on 10 December 2012 07:06

Hi Danielle, I have just passed the 3rd anniversary of my partial hysterectomy due to adenomyosis. I was diagnosed right before my 36th birthday in 2010. I wanted to thank you for such a truly warm and informative site you have created. When I was diagnosed I honestly didn't realize how sick I actually was and how many symptoms I had. I just thought I was an over-worked, exhausted, irritable wife and mother of two. It wasn't until I finally recovered from the hysterectomy that I could reflect on just how sick I was. I remember my husband (who is originally from Lincolnshire btw) and I, from the US, trying to do research so that we could be more informed with the disease, but there really wasn't much out there, even in 2010. Now, it seems to be greater thanks to people like yourself. I can say I thought for the longest time...oh great, of course I would be the one to get something not very well known. Now I don't feel so "abnormal"! Should you need any more info for your survey or future research, I would gladly make myself available. THANKYOU! Heather

Dear Heather, thank you for your lovely message. I am very pleased that you have found the website some support even post surgery. It is very important to me that the research that we do within the association is ongoing and monitors how women do after surgery to ensure that other women understand what adenomyosis is about and how to recognise the symptoms no matter what their age and MOST importantly that there is life AFTER adenomyosis! I will be publishing the results of the 2012 survey in January and thereafter there will be another survey for 2013. Please feel free to contact me in the new year to take part! x Thank you for your support x Danielle x

diane on 30 November 2014 21:49

Thank you soo much for sharring..I have been diagnosed with adeno..I amm 44 tried mirena had it removed after a week..horrible experience with it...I am meeting with a surgeon wednesday to schedule hysterectomy..I have living with no energy for years. They keep putting me on antidepressants and need some for ptsd..but they never work the same in any given day of the month...I am sooo tired of being tired fir years andvyears..I am on disability leave right now from work..please tell me that after surgery your energy and motivation returns...I used to be the perfect mom..now all I have energy to do is work and come home..not a life at all..my sons gonna be graduating and all I am praying is that this surgery will give me the energy I need to enjoy his last 8 months before he goes to college...please just ensure me I am going to feel like a normal functioning human again..thank you..diane!!!!

karen on 25 December 2012 01:46

This is the best site I have found and it is such an excellent and informative site, so thank you for that.
What I wanted to ask is why does adenomyosis cause lower back pain, and / or constipation and what you can do about it? Thanks

Hi Karen, and thanks for your feedback. It is reassuring to know that you are finding the information that you are looking for on the website x Adenomyosis in its worst form not only affects the density and weight of the womb, but it also presses on the nerves and muscles within the pelvic cavity, on the spine and consequently the nerve pain that is felt can occur in the lower back, thigh, groin, even as far down the leg as the knee. As you may well be aware, the lower spine (lumbar region) particularly L1, L2 and L3 areas (please look at this link)
http://www.google.co.uk/imgres?q=nerve+areas+supplied+by+the+spine&hl=en&sa=X&tbo=d&biw=1326&bih=665&tbm=isch&tbnid=EIP0RLKMGPFPuM:&imgrefurl=http://www.amcchiropractic.net/information/vertebral_diagram&docid=MfR8AlKgNhwoSM&imgurl=http://www.amcchiropractic.net/cms/files/VertebralSubluxationandNerveChart_0.jpg&w=1000&h=954&ei=cM3ZUPOgLqWe0QXkKQ&zoom=1&iact=hc&vpx=514&vpy=111&dur=1392&hovh=219&hovw=230&tx=139&ty=138&sig=103560011427104392008&page=1&tbnh=137&tbnw=144&start=0&ndsp=37&ved=1t:429,r:4,s:0,i:100
are also in direct contact with the swollen uterus and this in turn affects the bowel. All this pressure going on makes for impacted bowel movements, constipation and even the opposite as the nerves receive partial messages from the spine. It is worth going to your GP and asking for a stool softening medication like Movicol or something similar (generically) that suits your body and can assist to make you more comfortable mid-cycle. Different people react to different food stuffs and when people talk about fibre, what really helps one person can do the opposite with another. Best rule is drink plenty of water, stay clear of alcohol as best as you can and even caffeine as this dehydrates the body somewhat x Livestrong.com is a very useful website that helps advise on good diet etc x Keep in touch x Danielle x

Dannygurl on 01 January 2013 06:15

I am at this moment recovering from my hysterectomy to "cure" my adenomyosis. I didn't have severe symptoms until following a UFE (uterine fibroid embolization). I knew in my heart that there was a correlation to the procedure and my pain and suffering with severe cramps, however, the doctors dismissed my complaints saying "no other patients have ever had these problems."
I suffered for four years until I could take it no longer and my GYN sent me to a specialist who examined me, told me my uterus had doubled in size, and he immediately diagnosed adenomyosis. It may have been his German accent when he was explaining the condition to me, but I really didn't understand the condition until I did my own research.
I must say, your site is the only which truly covered the entire scope of my symptoms: severe cramps, pain radiating down my leg, back pain, bloating, bowel issues, etc. I was so excited about my hysterectomy, am recovering well so far, and have absolutely no regrets about this surgery. I am looking forward to my first month with NO PAIN NOR SUFFERING!
God bless all of you women out there who are going through this. Hysterectomy is life-changing to many women in negative ways, but for me it equals sweet relief.

I just recently have been dx with adenomyosis. I am so glad I found your site!!! I suffer from PCOS as well and am wondering if these have been found to be related. I undergo a partial hysterectomy this February but despite the PCOS the surgeon wants me to keep my ovaries. Just wondering if anyone else has had this experience and how successful was the symptom relieve with keeping the ovaries?? Thanks for all the info o far!!!

Hi Francine, my guess is that because of your age, your surgeon feels that leaving your ovaries is the best thing for you. I would refer you to the main Facebook page where many women have indicated that they have had their uterus removed because of the adenomyosis and have kept their ovaries and that this has helped them very much. This ensures that there are sufficient levels of hormone and even if one ovary is left, this can give sufficient levels of hormone to keep the symptoms of menopause away. One thing to be aware of is that after surgery, the body is aware of the fact that the uterus has been removed, so your body may go through a 'shock' where the blood supply to the ovary/s is disrupted x All in all with PCOS, the cysts often come and go as they please, and as you have been diagnosed with this condition, your surgeon will be sure to keep an eye on this condition - you are in very safe hands xx

Natalie Davey on 21 January 2013 12:45

I started suffering suddenly from this 2 and a half years ago, having previously been diagnosed with PCOS. My adenomyosis wasn't diagnosed until April last year and I really have not had any support. It has turned my life upside down and is frustrating because people aren't aware of it and therefore seem to brush it off as painful periods. It is more than that and has had a massive impact on me, my life and my family. I have been urgently admitted to hospital twice with it and actually collapsed and passed out with it the last time which was very frightening. I also like many others have been receiving treatment for IBS which after reading posts on this site I am now wondering if that has been misdiagnosed. It has been a relief to come across this website and realise that I'm not as alone as I have felt and that what I suffer is because of this dreadful condition. I also find it so frustrating that whenever I tell people what I've got they instantly say "oh yes endometriosis" because nobody knows about adenomyosis. Greater awareness, help, support and advice are definitely needed for this condition. Thank you for your website x

Dear Natalie, I am very glad you have found the website, and rest assured you are NOT on your own. When mentioning your condition please do mention the association and the website so that your colleagues, friends, family and anyone who comes into contact with you that notices you are unwell - can have an awareness of adenomyosis and can understant the condition more. In the meantime, make sure that you keep as well as you can, and ensure that you update your doctor/gyane specialist regularly if and as your symptoms change x Together we will make others aware, and you are always welcome to email whenever you need x Danielle x

Hazel Patterson on 25 January 2013 00:05

Hi and thank you for such a great website. I am recovering from a total hysterectomy with removal of ovaries which I had on the 12th December. I was only diagnosed with Adenomyosis after the surgeon found a mass behind my womb and sent it off to pathology. I just got the letter in a couple of days ago confirming the diagnosis. I had thought all along I had endometriosis. I had never heard of Adenomyosis and none of the gynaecologists had mentioned it to me before. I have been suffering daily pain for three years following a flexible sigmoidoscopy to investigate rectal bleeding. During the procedure the nurse touched an area and I hit the roof. I'm sure that this procedure cause my problem or maybe it just highlighted something that was already there. Either way, that was the start of my problems but everyone just shrugged me off. I was also diagnosed with an underactive thyroid and fibromyalgia at the same time so any problems with heavy bleeding and clots were shrugged off and put down to my other problems. It's easy for me to still get really angry when I think about the pain I put up with for three years. I work within the NHS and I still didnt get anywhere with a diagnosis. It took for me to push for a hysterectomy to try and get well again. I know its not a magic cure for endometriosis but I was willing to try anything to start living my life again. Fortunately I had my son when I was 23 and am now 41. A lot of women aren't as fortunate. I havent been able to tolerate HRT either. Have tried 4 different ones and they just bring my symptoms back and sore breasts too. My gp has given me calcium tablets and I'm going to just try and get fit this year and take up jogging. I'm already taking Fluoxetine which help with flushes and had been having GnRH injections for 9 months so the menopause wasn't as much as a shock to my body I dont think. I was really weepy after the anaesthetic though and a bit down once I got home. I went to my gp to get another sick line for work the other day and showed her my letter with my diagnosis, She just said "oh well you'll be glad you just had a muscular condition then and it was nothing to worry about". Just makes my blood boil that I had to go through so much pain and a hysterectomy to get a diagnosis. And the end of a four year relationship !! I asked for an MRI and was told it wouldnt show anything up. Even asked to go privately and got no where. I've learned through all of this to trust my instincts. You know your own body better than anyone and know when something isnt right. Sorry for the rant.
Hazel x

Dear Hazel, welcome and I really do mean it when I say thank you for your email x Your message is not a rant. This has been your experience of adenomyosis. You were and still are entitled to be treated with respect, dignity and with due care and attention instead of being on the receiving end of those thoughtless comments and attitudes and lack of support. I can completely relate to what you say when you talk about having a child when you were younger. You are right, the anesthetic does cause a feeling of being down, and many report to me that this takes some time for the effects to diminish, sometimes as much as six months. Your relationship was under immense pressure no thanks to all of the above symptoms etc, and although, as someone close to me once said - "pressure creates diamonds"- as you and I know, it also can crush something that perhaps was never meant to be anyway. Try not to blame the adenomyosis for everything though, it has made you stronger than you realise. The clinician that called it a 'just a muscular condition' etc needs to be corrected about their understanding of adenomyosis, its effects thereafter and the consequences physically and mentally of such radical surgery. At the very least they should be spoken to about their flippant behaviour towards you at an already stressful time. In case you do not have much time to hunt down the information, this link indicates the correct potocol for dealing with complaints within the NHS http://www.nhs.uk/chq/Pages/1083.aspx?CategoryID=68 In the meantime, concentrate on you x I am really glad that you are focusing on getting better and will be jogging when you are fully recovered. You will feel very much refreshed, invigorated and at peace once again with yourself - and when you are exercising regularly you will sleep better and will soon be feeling really well again. Keep in touch,take things easy and WELL DONE! - you got through it xx Danielle x

Karen D on 27 January 2013 22:34

This is a wonderful web-site and so supportive. I am 53 and have suffered with horrible heavy periods, exhaustion, bloating, IBS, etc. for over 5 years. My mother died of ovarian cancer so I get a pelvic sonogram every year. This past July I started "flooding". No more huge blood clots but just tons of bleeding so much that I couldn't leave my house for a few days. I missed work every month and was exhausted. Then the pain in my lower back started. I was sent for Physical Therapy & my PT suggested I get screened for cancer & also see a spine doctor since my pain was odd & wouldn't go away. The spine doc immediately recommended Epidurals to stop the pain & didn't care about the gynocological connection. I went to see a 3rd gynocologist because my gut told me that my pain was related to my periods & cycle. A pelvic sonogram in December indicated a lining so thick in my uterus that it couldnt be accurate. The technician must have been wrong. (The second gyno suggested an enodmetrial ablation. Didn't care about the sonogram results. I also told him I had a tubal ligation & Post Ablation TubalLigation Syndrome could result in low back pain radiating to the hips, thighs, etc. I already experience that so I don't want anything that would aggravate it. He told me he never heard of that.) The 3rd gyno thought I had Adenomyosis (I'd never heard of it)and recommended a Robotic Laprascopic Hysterectomy and referred me to a specialist who does that procedure and also for an MRI. The MRI confirmed Adenomyosis & ovarian cysts. I am so glad I trusted my instincts and got a third opinion. The gyno/surgeon agrees with the 3rd gyno that a hysterectomy is my best option. I am scheduled to get one in a week and feel less stressed about it since I found this web-site. Thank you!

Brilliant news Karen xx I am very glad you listened to those instincts and am very pleased to hear that you are very much on track! Keep in touch and let me know how you get on - and remember I am here if you need someone on the road to recovery ;o) xx

Kelly on 17 February 2013 06:49

Hi, I just recently found your site, I have to tell you that you have no idea how happy I am to read this. The last few months have been absolutely excruciating, I've had two doctors blow me off and have an appointment with another in a couple of weeks. I know my body, I know something is wrong. There is no way I should be experiencing this pain, this pressure, the bloating, the bleeding, the discharge. It all fits. I am on my feet at work the entire time...and after about three hours I can barely stand because of the pressure. I have had an ultrasound in which the ER doc (I had to drag myself there one day, unfortunately because of the pain) said I had a VERY small fibroid, and then proceeded to ask me if I suffered from depression. *sigh* Apparently, that's the standard diagnosis for us women who are having a female "problem" that doesn't have a clear-cut answer. It's so aggravating.
Almost every symptom here fits. I type this right now feeling as if my uterus is going to explode right out of my body, the pain and pressure are THAT bad, but thank God that all of you know exactly what I'm talking about.
I will keep you updated on the doctor appointment, if he doesn't mention adenomyosis...I AM.
Much love to all of you.
Kelly

Hi Kelly x Keep us updated and good luck with your next appointment, remember to write everything down - symptom wise, if it helps to remind you, so that the clinician has all the information that they need x Take care x Danielle x

Cory on 21 February 2013 16:56

hi My name is Cory I am 29 years old and have suffered all of my life with pain I just had surgery in july to have 3 tumors removed and my left ovary removed and now I am on the pill. I was told that I now have Adenomyosis and was told to have to have all of my female parts removed !! but I want to have another baby so this is not the right move for me so I am going back home to Boston to see my reg doctors to find a plane of action that I can live with.I feel their must me a better treatment for young woman than to have everything removed or taking the pill? I do understand That I will undergo more laparoscopic surgery just to stay comfortable and to remove any adhesion I may have. I just wanted to know if there has been any other research on this condition?

Dear Cory, research into adenomyosis is ongoing and as and when I am notified of any updates, these are posted onto the Facebook page. Please feel free to join the group if you have not already. Kind regards, Danielle x

mina on 13 March 2013 05:34

I've just been told I too have adeno...it all makes since. I've been suffering way too long. I can honestly say I have one good week a month-then it all starts. My body be too. What to do....Doctor has suggested an IUD. NOT SURE... ANY SUGGESTIONS. I'm 47 -can I hold off til I reach menapause ??? NOT SURE I CAN ANYMORE!!! HELP!!!

Thank you for your message. My first piece of advice would be to determine how far your condition has spread.
Your gynaecologist will be able to confirm this. An IUD may help if you have a mild case, so this of course needs
to be considered. You also need to be mindful of your symptoms and how these are affecting your daily life. Are
you able to work all the day through without taking a nap or sleeping for three or four hours and even then still feel
tired? Are you in discomfort all day and have pain in the pelvis, legs and back which is preventing you from walking.
If you have been tested for anemia, do you have low iron stores and has this been the case for some time? Have
you had your estrogen checked? If so were the results indicating a very high level of estrogen in your body?
Has your BMI rapidly increased through no change in your diet? Do you now have to wear clothes to fit your
expanding pelvic area to the point that you appear to be three to four months pregnant?
There are many questions that need to be asked before considering such an invasive procedure however, should
all of the above be confirmed to be the case and cannot be managed - hysterectomy is really the only realistic option to deal with adenomyoma. x Danielle x

Abby on 01 April 2013 09:32

Hi! I am new to this page... I am glad to find this out since I was really searching someone I can share my thoughts about my condition...
It was a year ago when I finally confirmed my condition... I thank God because I've been TTC for almost three years and it was a year ago that I found the reason why I was really having difficulty to have a child... Honestly I really feel sad because I really wanted to have a child / children... Now I found this, I know it will be a great help to all of us who suffer adenomyosis... Is / are there someone who became pregnant even with adeno and what can i best do naturally?
Thank you girls... :)

Dear Abby, with adenomyosis you do have to establish how advanced your condition is, as there may be a chance of pregnancy if there is a secton of uterus that has not yet been affected. If you are not already a member of the Facebook group - please join as if you do, you will be able to scroll down and read the positive stories where women have achieved a pregnancy x

Catherine on 18 April 2013 04:01

Hi, I am new to this group, and I also joined the FB group. I wanted to know if you can post questions on the FB group? If not if I can share a little bit here. I have endometriosis, symptoms since I was 11, first started period. Diagnosed with lap surgery in 2000, and had another lap done in 2002. I have been dealing with endo pain for a long time, but after my second lap in 2002 it did improve but still there. I also have other medical conditions, won't get into that right now, long story. However, I finally had my first and only child in 2007. After one year of having my child and stopped breast feeding I started to have endo type of pain again, but something was different, some of the symptoms. As soon as I described my symptoms to my gyne she said it sounds like Adenomyosis, and I had no idea what it was, just like when I was told I probably have endometrisos 20 years ago. So for the past 5 years since having my daugther my endo pain is back, but now it seems its more to do with the adenomyosis. I have had several ultrasounds, showing bulky very enlarged uterus, also recently had MRI done, showing same, bulky enlarged uterus. Here are my questions, regarding symptoms, because I have both endo and adeno, I know endo symptoms, but not sure of these symptoms because are different from my usual experience with endo, and want to know if these symptoms are common with adeno. Symptoms: First of all have gained a lot of weight with pregnancy, and have never lost the weight, not obese but overweight, however I look like I am pregnant. My stomach doesn't have fat that hangs down, I have a high up belly that is hard/bloated, looks like I am carrying a baby. Pain symptoms: I have a feeling a pressure/fullness right over the belly button area and just around that area. I also have pain just to the right of the belly area, where the appendix is, and this pain never goes away, 24/7. I have a pulling/strecthing type of pain in the belly area and to the right of it. I have to pee more frequently, and sometimes its very often, like every hour, and there is almost no pee but I feel pressure that I have to go pee. I always have urinary leakage, not just with sneezing or coughing, but I am just leaking a little bit throughout the entire day, I have to where a pad everyday. I do not have bleeding between periods, but my periods are not very regular anymore. I feel pregnant, like there is something structural down there, it is a pressing feeling when I sit down, and when I strech up I can feel it. When I cough, deep breath I can feel something to the right of the belly button. I am at a lose here. My gyne is great. However, myself I feel confused, because I have endometriosis, and last surgery showed some endo on my lower bowels. I have colitis, which they kept saying IBS, well its not, its colitis. So I have endo, adeno and colitis, and I don't which symptoms are due to what. Having a hysterectomy may not be a good option for me, because in terms of what is causing all of my symptoms....because I have endo and was found also on my bowels, having a hysterectomy will not take care of the endo pain on my bowels. I am also going to have a cystoscopy done soon to check the inside of my bladder because of my bladder issues, gyne wants to know if I have endo inside my bladder. In terms of pain control all I can do is take pain killers and that is barely helping. I do not do well on hormones, have tried every birth control, I do not respond to hormone therapy well. I suffer from migraines and when I am put on any type of hormone medication my headaches come back really badly, so my gyne tells me to go off the hormone pill... I am 42 so risk of blood clot on hormone therapy is high. IUD, mirena, same thing, can't take it because of the hormones. So what's left? Not much. At this point waiting it out, but I have had pain now everyday for the past 3 months and its 24 hours a day. I am beyond exhausted. I wait for each cycle to come and go to see if pain with subside and it doesn't. The next step would be to do another laproscopy surgery so gyne can go in to see what is going on. I can't go straight to hysterectomy because as said before I have endo and its on my bowels. Honestly I am scared to have a hysterectomy done. Sorry for the very long post. If anyone can please respond regarding the symptoms I have described if this is common for adeno. A lot of my pain is right over the belly button area and around it, and to the very right where the appendix is. This feeling of pressure is just awful, feel like I am about to have a baby! Thanks for listening.

.............sorry want to make a correction, I didn't have an MRI done, I had a Cat Scan done, if that makes any difference.

Danielle on 18 April 2013 15:07

Dear Catherine, thank you for your message. Yes you can message via the website at info@adenomyosisadviceassociation.org, via Facebook at the top of the page using the 'Message' button or via the 'Contact Us' page on this website. Either way your message will be responded to by me confidentially x In the meantime, to answer your question - I am afraid your sympyoms are related to adeno. This is not to say that there maybe other things going on as well, but I have a feeling that from what you describe a number of the issues have been caused by the development of the adenomyosis as it has progressed. The pressure caused inside the pelvis may in fact be causing other issues and this is why it is worth noting your symptoms in a diary and reporting back to your GP regularly as you may find that your appendix for example may be under pressure from the bowel. Best thing to do is to go and see your doctor and relay all the pain symptoms in that localised area and say how long it has been occuring and take it from there. There is absolutely no harm in checking - just to make sure, as if it it a grumbling appendix that will need to be sorted out as a matter of course if it is inflamed anyway. Keep in touch and let me know how you get on. Take care x Danielle x

Hi Danielle, thank you for the response.
I have also thought that it is my appendix, but I have been to emergency at the hospital so many times these past 3 months and to my GP and to the specialists (gyne and gastro docs)...had a few ultrasounds done and a Cat Scan...nothing shows up about my appendix, and I have asked them about my appendix and they have said it is fine because it would have shown on the ultrasounds or the Cat Scan...and they said appendix would have ruptured by now. However, I understand what you mean about how it can put pressure on the appendix and anything else in the area of the uterus. Adeno is new to me, I am very familar with my endo symptoms because have been dealing with it for so many years...so thats why these new symptoms confuse me. Also what I wanted to ask is, what is a definite diagnosis of adenomyosis? Because my ultrasounds and cat scan show enlarged uterus and I have some or maybe many of the symptoms to go along with it...however the scans all say bulky enlarged uterus with the dimensions, and says suggests adenomyosis. So how do they know for sure? I guess only way to know is by going in, doing a laproscopy? I am trying to avoid surgery if possible. Going back to see gyne and take it from there. I want to do an MRI, not sure if that will show anything different but going to ask my gyne to do it...my gyne is good, she will do it if I ask....my GP is of very little use at times, because of my extensive health problems and long history when I ask to have something done, many times she has said to me its not neccessary. Luckily I have a huge team of specailists that I can rely on that are good. Thanks again for your reply and for the information. take care.

Annabel on 31 May 2013 03:28

I have been recently diagnosed with Adenomyosis, however I am sure I have had it for years. I also have cystic ovaries.My question is, is 42 too young to be considering a hysterectomy? We have had our kids and I just don't see why I need to put up with the monthly pain and flooding and now unpredictable bleeding throughout the month. I am hoping at least one of my ovaries can be saved so I do not need HRT.
When I think about it I spend on average 4-5 days a month where I have to be careful where I go and what I do. I want my life back!!
Should I be pushing for a hysterectomy at my age?
P.S I am in New Zealand

i have been diagnosed with adeno last jan 2013. problem occurred during my last pregnancy. When i got my first period during my last pregnancy last dec 2012,, it wont stop. don't know if it was regular menstruation or bleeding heavily.. got 3 bags of blood transfused.they only treated my heavy bleeding but was not diagnosed when i was confined last dec.. by jan was again confined and 2 bags was transfused. Then came along the adenomyiosis diagnosis.. got shocked. don't know what to do. temporary treatment was injecting hormones into my system so that i will not menstrate anymore.. but eventually it's not effective, by this time im considering hysterectomy because of the continuous bleeding and enormous blood clots emitted by my body. i'm always light headed and gets tired easily. i feel drained always. please pray for me.

I am so happy to have come across your website! Thank you for all the great info you have supplied! I had miserable periods all my life with massive cramping to the point of being bed ridden and vomiting the first 2 days along with super heavy flow for 5 days. After having my 2nd child my periods would be 5 full heavy miserable days every 2 weeks. At 29 I went on the depo shot to hopefully stop my periods and it worked wonders until I was 35 then was told I had been on it too long and had to quit. I refused to going back to having horrid periods so was referred to have the ablation done. At 35 I had the ablation and my tubes tied and still no period or spotting or any cramps so I was relieved! Over the last 2 years I have lost 65 lbs but my lower stomach and pelvic area always look swollen even though I am now very small at 123 lbs. I have to wear bigger pants then I should due to this. Over the last 6-12 months I have noticed tons of other symptoms and have known something is just not right. I have been to many specialist and Dr's trying to figure out what is wrong with me and nothing has been diagnosed or fixed. The last 6 months has been miserable with massive pain in the area I thought was my right ovary/kindney area and also have had many bouts with bacterial vaginosis. My lower back pain is unbearable most days along with the pain radiating down my legs and the swelling in my legs. I went for my yearly pap about a month ago and told the gyno about my massive pain and bloating/welling, major pain with intercourse and that something is just not right. She order an ultrasound and I went back 2 weeks later to discuss the results and she said I had a few tiny cyst on my ovaries but that shouldn't be causing the pain. My legs have gotten so bad that I have an ultra sound scheduled for next week to have my veins checked due to already having veins stripped out several yrs ago and thinking I have more problems with them. Yesterday I got a call from my gyno's office telling me that after further review of my ultra sound I have endno and if I want I can schedule an apt to come back and talk to the gyno about what to do. Needless to say I was floored and had no idea what they were talking about so I didn't schedule an apt because I wanted to do some research and find out what exactly this is. Your website has pretty much proven to me that I for sure have it due to the fact I have every single symptom aside form the period ones since I no longer have them but I have every other symptom you have posted! At this point I am thinking the only way to go about this is the hysterectomy with just removing the uterus. I 44 yrs old and waiting for menopause with hopes that all this will stop and I will be pain free could take anywhere from 5-15 yrs and that is just too long to be so miserable and still no guarantee to be pain free. I will be calling the gyno Monday to schedule an apt but I also wanted to know if I should seek out another Dr/specialist to actually perform the surgery? This is a new gyno for me and I am not so sure as to who I should really be looking to for this surgery to be done correctly and efficiently. Any info ont his would be so appreciated and again thank you so much for such an informative website! You have no idea how much your site has made me feel so much better about my situation!!

Hi There. I'm new to this site. I have recently had a laparoscopy to diagnose my extreme pain and discomfort. We all thought it was adhesions again but the surgeon didn't find any. During this time, I've had loads of tests done, one of which was a scan which showed I had an enlarged uterus. I have all the symptoms of adenomyosis and such discomfort and constant period like pains but also the most intense pressure I have to lie down sometimes. Although none of these tests have actually indicated adenomysis, they have ruled out things like fibroids, prolapse, etc. etc. Is it possible to have this without it showing up in any tests. I am now waiting to be referred to a gyn. Any suggestions would really help. Thank you.

Hi
I emailed to the info address before I realized this was here... but I just want to thank you. All the symptoms listed I have been experienced for the last two years plus. It was a relief to find this site after tests for all sorts of things with no results until an ultra sound with a gynecologist today who confirmed I had adenomyosis. I am a health professional and I have never heard of this before although I am familiar with endometriosis. Adenomyosis has had a profound impact on my life and recently my iron and blood loss had been so heavy, I had three blood transfusions and an iron transfusion. This helped for a while but after the last two week bleed I am back to square one. The edema means I have had heart tests, the gastric symptoms have meant ct scans of the bowels etc and it is very frustrating when you know something is very wrong... but there seems to be no answer for it. The back pain in the lower back to the point of feeling like my spine wouldn't even hold me up, was quite frightening. Today has been a mixture of relief and fear. I have been offered the thermal balloon ablation procedure or the hysterectomy by laproscopy. I would like to ask if anyone has had the balloon procedure for this, retaining their womb and how successful that has been.I don't want to do that and then have to go through the hysterectomy anyway. Even though I don't want more children I am worried there may be other side effects like organ prolapse or loss of muscle mass or less sexual pleasure etc. How has this affected other women after they have had the hysterectomy and do you feel it was a positive choice?
Thank you so much for such a detailed supportive and informative site... today it has been a blessing.

Hello fellow sisters of this Adenomyosis journey. I am 30 years old a mother of a beautiful 3 year old, and two days ago I was diagnoses with this disease. I am not going to pretend I am not frightened, because I am. I felt so alone and felt like God what did I do so wrong to have this? But then I realize that everything happens for a reason and I have to continue on with my trust in God and allow him to help me through this journey. My wonderful sister who is always concerned with me found this amazing website and I am very grateful she found it, because all of my questions were answered and plus I realize I am not alone. After doing some research I decided to go through with my Hysterectomy especially because I cannot go on living with this pain any longer, I am a widow and a single mom and I want to be in the best shape for my son. I want to see him get married and have children of his own. I have been suffering with this pain for 8 months before I went to my doctors office a couple of days ago and demanded that he do some other exams to help determine what is exactly wrong with me. previously every exam I took said I was "fine" and my gyno would tell me I am in perfect shape. but while he was speaking to me I was in severe pain and I have been bleeding straight for 8 months! something had to be wrong, so now with this new diagnoses I feel so happy that they detected what the problem really is. I thank you all for sharing your stories, we are truly courageous women here. Most of all that you for creating this website.

Hi Danielle,
Please can you give me some advice. My name is Gemma I am 28years old and currently in a lot of pain at the moment. I was wondering from my symptoms if you could let me know if its worth bringing this up with my gynae consultant. I have 2 children both were born c-section 1st was an emergency and second was my choice. My children are 11 years and 4 years old. In 2005 prior to my 2nd being born I was taken in to hospital with abdominal pain was in for 7 days and treated on an IV drip with a triple dose of antibiotics the doctors could see that there was blood and protein etc in my urine and my white bloods cells were really high. They told my parents that they thought it was a severe urine infection and let me go home New Year's Eve as thy needed the beds etc. I then came out of hospital and took a double dose of antibiotics after a month things cleared up. Over the next three years I continued to have pain and was told it was a urine infection, chucked on to antibiotics and then lab results would show no infection. After a few years of this I now have to get urine tests sent to lab before starting treatment as was being put on them all the time. In my 2nd pregnancy things got really bad by 12 weeks I was taken into hospital and told I had SPD and was admitted throughout my pregnancy. I was signed of work for the whole time. After my lovely son was born I continued to attend my GP complaining of pain on RH side into my pelvis, pains in my tops of legs, lower back pain, irregular bowel movements, when I was not on my depo injection I would be covered in blood from periods through my clothes etc,. My doctors said I had so many different things IBS, bowel disease, inflamed liver etc the list goes on. In oct 2012 I asked my GP about endometrosis as I had the same symptoms from what I had read. (Symptoms of lower abdominal pain, contraction like feelings across tummy, bloating, jumping from a size 14 to 16 in the space of a few hours etc, back pain, a feeling of tearing when getting up, pressure on my bladder, passing lots of urine or feeling the need to) anyway I then was taken into hospital in dec 2012 with very heavy bleeding, vomiting, dizziness etc and was told that there was nothing really wrong. Although I knew something was not right I was kept in and had a scan which showed a cyst at 4cms as it was over 3 they were concerned but under 5 they don't operate. I was in so much pain. But was given medication to ease the pain and rescanned after 12 weeks which showed the cyst had gone. I then had a laparoscopy in march his year where my consultant could not see anything. I was sent home and given more medication at present they have got me on 2700mg of gabapentin and tramadol I have just had my first injection of decapetyl and on Hrt. I feel so sad and confused as I know the pain is there but no- one seems to be able to help me. I am on the injections for 3 months and also my own GP has arranged a MRI to check my back incase pain coming from there. Please can you let me know if you think this could be linked to adenomyosis or would you think this would have been picked up in he laparoscopy.
Kind regards Gemma

I'm a 49 yr old who has had these horrible symptoms since Mar of this year. My regular OBGYN did not see anything on a vaginal ultrasound (that I was crying through because it was so painful), and shuffled me off to a gastro dr. After going through an ER visit due to the unbearable pain and a colonoscopy (that was completely normal), I decided to do a little research and found a fantastic dr. here in Atlanta who specializes in endo/adeno. He diagnosed the adeno right away and I'm scheduled for partial hysterectomy in a couple of weeks. Why aren't more OBGYNs aware of this condition? My previous dr. had me thinking I was nuts! Even after I updated her on my condition she blew it off; needless to say I won't be going back. In any case, this website is wonderful and it's such a relief to know I'm not alone! I am so thankful I found the right MD and got the right diagnosis. Looking forward to having a normal life again after the surgery!

Hi I was bleeding 3 weeks of the month, very hevey and pains like I was in labour. This lasted 18 months till they found out what was wrong with me which I was diagnosed with adenomyosis. I had scans inside and out, keyhole surgery, die put inside of me and more doctors and interns seen me that I could deal with. I have got to the point that I don't even want to have sex as I'm in too much pain and I will only start bleeding again. My mood swing are terrible, I go from snapping, shouting to crying. Now I'm on the pill it has eased it but I'm still bleeding and in pain but not as much, but when I need to go to the toilet no matter what it is I'm in pain before and after. I'm going back to the doctors to see what else they can do. I do not want hysterectomies as I'm 36 with 1 child and desperately want another child. Thank for having the site as I thought I was alone in this. Xxx

Hi..I have just come across this website following a diagnosis from my GP of mild adenomyosis and fibroids. I am 45 and have never had children, although I have had 2 terminations many years ago. I would like to have a baby but I have now had this diagnosis and I am wondering what my chances are. Can you help?

Its now almost 1am and I am sitting here in so much pain that I have switched my pc on to try and find a solution! I was diagnosed with Aden around 4 years ago. The gynae i saw wanted me to have a hysterectomy but I had had a miscarriage only 3 weeks before adn I still feel I'm not ready for that. I am due to fly out to Barbados in 2 days time-lucky me but I feel like not going as I cant sit on the plane for 8 hours in this pain. I had been on Mefanamic acid but around 5 months ago was also diagnosed with Diverticular disease so can no longer take it as it can cause the apin from that to flare up. So I'm in a no-win situation. I am nearly 48 ( Barbados is a birthday present from my Husband) and I really dont want a hysterectomy yet. I've tried eating healthily, exercising-have lost over 7 stones this year, but nothing seems to work. What else can I ask my GP to do? Please, I am desperate for any advice.

Hi there, I just wanted to say thanks for a very informative and helpful site. I'm 28 from the UK and with a long history of endo, my first laparoscopy was 3 years ago. The last few months my pain has been so severe every day that I am often doubled over in pain and work with a got water bottle strapped to my lower back. I just had an internal ultrasound scan today and the consultant has said I have a v enlarged uterus, fibroids and possible adenomyosis. It's the first time I've ever heard his term, and searching it has brought me to your site. The symptoms page is uncanny - especially the sharp pain every time I sit down. The consultant today has booked me in for another laparoscopy to explore more. I'm not looking forward to another op but can't deal with the pain any more - also very scared about the possibility of infertility as getting tot the stage where I would like to have children. Also, I have stopped taking any hormonal treatment as I have a history of depression and I found the pill, Mirena and others were making me desperately unhappy and with intolerable mood swings. Any advice gratefully received, thank you x

I'm so thankful i stumbled upon this website: I've been diagnosed with adenomyosis and will have surgery in about 1 month. Previous to finding this website I stumbled onto another website for women who have had a hysterectomy and it was all negative about going through with the surgery saying my symptoms would stay the same. I'm so relieved to read that i WILL feel better and now i know this is the right option. i've been suffering so bad .. i don't think anyone unless they've experienced can understand how awful this is. i will check in after my surgery. Thanks for positive comments and encouragment.

I am 54 and have just been diagnosed with Adenomyosis after many, many years of gynae difficulties.
Miscarriages in my 20's and heavy periods/pain all my adult life. Since my 40's recurring anaemia and excessive blood loss and pain interfering with my work and personal life to the extreme at times.
Endometriosis since my 20's too but this recent diagnosis of Adenomyosis - I hope - does explain my experiences and symptoms.
Knowing what it is now is a great relief and I now need to get on and manage it.
I use Reiki as part of my management but am also aware now of the other range of options.
This site has been extremely helpful on all levels so Thank you Danielle and all other contributers x

Hello, Im 39 , was diagnosed with Adenomyosis apprx 6mths ago. Thank you for this site , its the first time I have seen ALL of my symptons in black and white.... Especially the one where you feel like your uterus is trying to push out your vagina!! I have been trying to explain this feeling since my last child almost 3 years ago.... I am booked in for a Hysterectomy in April , and needless to say I am a little nervous , more so cause I have 3 small children and I know I will hate not being able to look after them properly.However the thought of not having to go through this crazy circle every month is very exciting ... Cant wait to be my old self again , instead of crazy cranky mum & wife , I feel like i am blowing up like balloon and some months look 6mths pregnant. Thanks again for all the info on this site : )

Am extremely grateful to have found this website. I have suffered for the last 12 years with all the symptoms listed in this site. Before my diagnosis on 7th March, I had never heard of Adenomyosis. I have moved from one gynae to another. All the time being treated for recurrent candidiasis, sometimes UTI, last year I was treated for PID and put on Vitamin D supplement then for a few months I felt a little bit of relieve. My oedema of the legs has become so severe that for some days before periods am immobile and this is one of the things that has made me keep on looking for help. Am scheduled for hysterectomy on 20th March and I must say that the information in this website has been of great help. I look forward to having my life back. Thank you Daniella.